Pain is, undoubtedly, hard to describe. Hot, cold, cramping, snapping, scaling 1-10. It’s all subjective and so damn hurtful that I’m sure most of us would like to never have to experience or describe it. But writers never like to sway from a literary challenge, do they? This begs the question: why is chronic pain, and in particular pelvic pain, absent from young adult fiction?
Pelvic pain is a misunderstood, misdiagnosed, poorly researched, and poorly treated spectrum of conditions. This applies to a lot of disabilities and illnesses, as many of us would know. Pelvic pain can affect all genders at many different ages. The cause can be a myriad of diagnoses, from endometriosis, to PCOS, pudendal neuralgia, vulvodynia, and even fibromyalgia. Symptoms include daily pelvic, menstrual, vaginal and muscular pain, cysts, tiredness, nausea, headaches, hot and cold flushes, dizziness. Pain upon touch, pain for no damn reason. Ill mental health is a big consequence of these constant, unrelenting symptoms. Medical treatments include a cheerless cocktail of painkillers, physical therapy, herbal supplements, contraceptive measures, and counselling. Not even a cute umbrella to go with the pink ice. For this twenty-two-year-old writer, the current diagnosis is the ever infuriating “nerve pain.” Looking at that diagnosis and then at my symptoms, it’s kind of like Fate has shoved me into the “too hard to figure out” box.
Angst like this would be perfect for young adult fiction. With 1 in 7 women estimated suffering from chronic pelvic pain (CPP), there is certainly enough readership and audience to warrant characters or storylines with a focus on chronic pelvic pain. It’s bizarre and disappointing that despite these statistics, there are distinctly zero characters with this condition. That means, statistically, there must be some writers wanting to get a story with characters just like them out there, too. I know I do, and I’m trying! It must be noted that, of course, YA fiction doesn’t only encompass the type of angsty, Laurie Halse Anderson novels that I treasure. (Just making sure everyone understands my deep-seated love for Anderson. It is deep.) Novels featuring chronic pain can be in the fantasy, sci-fi, horror, and thriller genres as well.
Undoubtedly, there must be a number of reasons why chronic pelvic pain hasn’t been written about. As I’ve mentioned earlier, pain is hard to describe, and totally subjective. This could lead to authors unable to come up with new and interesting ways to explain how a character is feeling. A bigger stumbling block for authors seems to be that chronic pain often doesn’t serve a narrative purpose. It might seem too tricky or reductive to have a protagonist go off on an adventure while having to stop at every castle for a rest with a heat pack, or to be out of their minds on painkillers while slaying a dragon. But then, (physical) difficulties haven’t stopped all of these amazing books and characters from coming alive. So that excuse gets thrown out the ableist window.
For me, it mostly comes down to this sneaky, inherent little sexism that is attached to chronic pelvic pain. Although it can affect all genders, it mostly affects body parts such as pelvises, ovaries, fallopian tubes, and uteri, and thus predominantly affects females. This may contribute to the current blank space in YA lit.
Due to much of history kind of being like a boy’s club were girls were gross and had cooties, today it’s still unseemly to talk about periods, pelvic pain, and vaginas in polite company, let alone in fiction. People don’t want to read or hear about menstrual blood or think that maybe you have a reproductive system underneath your skin that is causing you so much trauma. From experience, I’ve learned just to say I have “chronic pain” when asked. People can be okay with, say, back pain. Their uncle or aunt has it. It involves something we all have: spines and muscles. But pelvic muscles? The things that are inside … someone’s … p-p-private parts? WE DO NOT SPEAK OF IT, M’LADY. And so a culture of silence has enveloped sufferers of chronic pelvic pain, and in literature we can’t find our voice.
Fertility is often a big issue for sufferers of chronic pelvic pain. For those who are young and want children (let’s take a moment to also acknowledge the kick-ass people that don’t, please), fertility issues can be depressing and life-changing. This might make budding authors believe the only way people with CPP can be written is if they are struggling with infertility. While this plotline is unlikely in YA despite its urgency in real life, it’s worth acknowledging that all stories involving CPP sufferers with infertility do not have to be wholly sad. People are more than their uteri and fallopian tubes: while those organs might rule their painful lives, they are not someone’s whole identity.
There are amazing reasons why characters with chronic pelvic pain should be written, by sufferers and those interested in this condition alike. It’s been proven that seeing positive representation with your identity in fiction or other media boosts self-esteem, especially for underrepresented groups. Writing a story about CPP would not only allow readers to connect with a character, but see you contribute to the important issues of chronic pain awareness and visibility.
Pain can add the angst or hurdle you’ve been looking for in your protagonist. Maybe along with finishing high school and dealing with divorced parents, she has to come to terms with her diagnosis of endo. What about having a teenage girl who, after a battle with her sworn shapeshifter enemy, is stabbed in the pelvis and lives with the pain and scars to remind her of her sacrifices to bring peace to her realm? THE STORIES WRITE THEMSELVES, PEOPLE. And don’t forget that it’s not only straight women who suffer from pain—a trap both the medical and spoonie community often fall into. Get those femmeslash fingers typing.
As evidenced by the popularity of the We Need Diverse Books movement and other diversity initiatives, there is a demand for writing about pain, illnesses and disabilities. We need more modern books written for people with disabilities by writers with disabilities. There are opportunities to connect with readers with disabilities and illnesses through places like Disability in Kidlit and spoonie Tumblrs. If you don’t suffer from CPP yourself, do your research and find networks to sell your story!
There are so many amazing reasons why visibility of pelvic pain in YA fiction is desperately needed. If you’ve got the doctor’s pad and a (pain)killer story, there’s an audience waiting for you to write out a prescription.
 5 reasons for Pelvic and Vaginal Pain, Prevention online, accessed from http://www.prevention.com/health/health-concerns/5-reasons-vaginal-and-pelvic-pain
 Conversations about Body Image: A Place at the Table for Me? by s.e. smith, FWD/Forward, accessed from http://disabledfeminists.com/2010/09/11/conversations-about-body-image-a-place-at-the-table-for-me/